Lumpectomy Lounge....let's talk!
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Thanks you so much RMlulu ! Good news!!!!!!!!!!!!!!!! Margins and lymph nodes clear!!!!!!
My surgeon suggested contura breast brachytherapy. Has anyone else did this? I just took a look at adverse events.
Lespring - I'm getting the same stinging and burning under arm. Dr. took off bandages yesterday, and applied steri-strips. Stinging and burning is happening when I sweat. He said that is normal, but everywhere I feel around the area is warm. I'm still putting ice just underneath my arm when I feel the burning, if I keep my arm elavated a little it also feels better. I hope you called, and have gotten some answers.
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Louanne,
I had the contura balloon rads in Nov.2011. Went fine. Did develop a seroma that had to be aspirated twice, (I don't remember how many ccs.)
I am glad I was able to do it, since we live 70 miles away from the cancer center. My RO said he was on the team that developed this particular form of rads.
I certainly would do it again, should I have had to make the choice again. (I know only one series allowed in a breast).
GOOD LUCK
VIckie0 -
Thanks VIckie! I found out today that my insurance may not pay. They do pay for 60 and older. Plus only a handful of the procedure has been done in my area. I thankfully have some time to get first and second opinions if needed.
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Feeling down.
I'm a teacher. Just came from a funeral home visitation of the mom of two of my former students, 18+ years ago. Yes, you know what I'm going to say...breast cancer. She was a wonderful mother with 4 darling children. How is it that with all of the screening and all of the money that goes towards this disease, that women are still dying of it? I just don't understand. JUST before the 5 year mark of being clear, she was diagnosed again. The second round of cancer was aggressive and horrifying. She did not last the year. I did not mention to my girls (former students) that I too am battling this hellacious disease. I know that the prognosis is good with DCIS and IDC in these early stages, but it is still absolutely terrifying. I was afraid to ask what her original diagnosis was in 2008.
This summer, I met someone who has quickly become a best, best friend. We were on a cruise and simply became sisters, really. Our kids hit it off as well. It was if, we were meant to meet each other. In one of our conversations this summer she shared that it had been a rough spring. Her closest friend (and sister-in-law) had just died of breast cancer. Six months after meeting, I was diagnosed. I felt horrible telling her. I wanted to keep it from her, but knew I couldn't. I really feel that the Lord put us into each others' paths, but to have her now have to deal with my breast cancer too? It just doesn't seem fair.
I know I'm rambling. My mind is just racing over all of this. Breast cancer seems unescapable. It is everywhere and so many are losing their lives to it. I can't help but worry that that will be my future too. Sorry for the less than Pollyanna attitude tonight:(
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It's okay, motherofone. I feel the same way. This is a horrifying disease we face. We have many more options and a better chance of survival than years ago, but the reality is each of our cancers are different. There are some similarities among us and science tries to find more and more of those similarities so they can try and help some of us. I have a cousin who went into cancer research many years ago and I remember him telling me at the time he made his decision that they would not find a cure for this disease, not in his lifetime and probably not for many, many decades into the future, if ever. He said there could never be a generic vaccine for cancer because there were too many different types and differences in mutations and cells. I have lost family members and friends over the years, and now I have it. Women battle breast cancer -- men battle prostate cancer, and there is everything in between. Some of it is genetic, some of is environment and lifestyle, and some of it is beyond that. I had a friend who died of pancreas cancer. She had never had a drink, never smoked, did not eat suger, everything she consumed was organic and she was a vegetarian. She ran and was in amazing physical shape. Cancer did not run in her family. She lived only 6 months with the disease. So someone tell me why she got cancer? I would like to know. It makes no sense.
So there is my rant for the day! I worry too, motherofone. All we can do is the best we can do in the face of the enemy. I try to enjoy each day but it is hard sometimes. I think we all understand how you feel.
Hugs to you.
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Yes, I too have lost friends and family to cancer, recently a dear friend died not from the bc but from the treatment, her heart just couldn't take it. Another died from bc back in 1994. And my sister in law, mom of 3, ages at the time of her death, 7, 12 & 17, died from brain cancer.
And then I also have 4 other friends one over 15 years out, one 6 years, one I'm not sure but at least 3 years out and the other 7 years out.
Of these, one was hormone+, one tn, one her2+ and one was ILC(not sure of her receptors).
I try to put it in God's hands abd just live.
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I had brachytherapy in September. I also ended up quite nauseas and had to spend a couple nights in the hospital. My skin never burned but I did develop a Seroma that had to be drained, but that has not happened since. I live 120 miles from the cancer center so it was a good option., My sister also had brachytherapy as she was diagnosed with breast cancer 2 months after I was after I insisted she get a mammo. That made for of us in the family with breast cancer this year ages 33 to 60. 3 of us were tested for braca and came back negative. I am now being tested for a genetic link that they say is now linking breast, colan and stomach cancer as my sister died at age 44 with stomach cancer and had the type they are now testing for.
Where all this cancer is coming from I do not know. I also lost my 3 year old niece and 1st cousin to brain cancer. My mother and uncle to lung cancer, my sister and grandpa to stomach cancer and the list keeps going.. sigh.. scarey!!
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When I was diagnosed I was as devastated for my husband as for myself. He lost his previous wife to BC in 2001. We met in 2003. He has gone to every mammogram with me. Two days after I came home from Serbia with our newly adopted daughter, he was there to physically hold me up when I wanted to collapse to the floor in a ball and sob. I can only image what was going through his mind as he was trying to hold himself together for me. Thankfully for us, this will NOT be the same thing. His previous wife had BRCA 1 and 2. (this was right before the genes were isolated. She was in the Mayo clinic studies to help isolate the gene.) My doctors told him "This will NOT be what you went through last time." We have 5 kids with Down syndrome. I can't imagine leaving him to deal with all of this. Even though I know its not my fault, there is this tiny piece of me that hates doing this to him.
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Ok, ladies.. I’m going to post this on several threads
hoping that maybe some of you can offer some answers to the following: I was wondering why in the routine checks
following BC that the tests ordered, at least for me, are only blood work, bone
density test and a six month mammo?As I read through these threads, I do find that some of you
had recurrence in the breast, but most of the time this ugly disease finds its
way to other places thus becoming mets!!
Now to me, it seems that at least once a year that some sort of scan
would be run to check for this, and even with folks like me, who had a very
aggressive tumor, the checks should be run more often! I mean, I think my tumor showed up in less
than 3 months. My MO said that he would
only order tests if symptoms presented!
Well, I have different pains now since finishing rads and I’m confused
as to what he would consider symptoms!
When I talked to him about the pains, he said, no need to scan as my
blood work was fine! This is another
scary issue as I’ve read here that mets can present when blood work is normal
and even without any symptoms at all!
Now I’m assuming that if the mets IS causing symptoms that they would be
consistent or non stop and everything that I am experiencing comes and goes and
sometimes is gone for several days, but when it’s there, it’s REALLY
there! I mean so bad that it affects my
quality of life! And even on the days I
have pain, it may be for just a few minutes or it may be hours or it may be all
day!I AM SO CONFUSED AND FRUSTRATED!! I just don’t understand why standard of care
does not involve testing to check for mets!
And I know that some of you have told me to insist on a scan, but when I
tried this, I was told that it would be subjecting me to stuff that was unnecessary! And I know that there are some test that do
not expose you to stuff! But obviously,
those test could possibly come back as inconclusive and warrant more
test!! It seems like a vicious cycle and
I really would like to get out of it!!If this is a repeat on this thread, or if I talked about this before, please forgive me, it's just that right now I'm so frustrated and confused and scared!
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Nettie, I agree with a lot of what you are saying, and when I next see my MO and RO, which will not be for another 6 weeks, I am going to ask myself. If you want a scan or some test, demand it. Personally, I would have to be willing to bear some of the cost because (and I could be wrong about this) insurance often will not pay for anything for which there is no indication of a problem. In other words, I am not expecting that my insurance will pay for my next mammo because I am only allowed one per year. Now so far, it has paid for my staging tests (oncotype, Bracha, bone scan) and I could ask for additional tests and I think my MO would be fine with that if that was what I wanted. But I might have to bear the cost and, depending on how much that is, it would be difficult for me. If I feel compelled to do something though, trust me, I will find a way to do it. For piece of mind if for no other reason. I wish scans, MRIs, etc. were covered if we wanted them, but as far as I have been able to learn, my insurance company only covers if there is some indication of a problem, and by then who knows if it would be too late?
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I understand, but you would think with all the pains I've been having that would warrant a scan?
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Nettie - have you talked with MO...wondering if this is related to AI Aromasin SEs.
Journal your pain/SEs ...there is a big let down when we finish active treatment. For months our team has been seeing us...rads daily...then no one nothing. PTSD set in a bit than I brushed off and began journaling my body.
I see my team every 6 mo...mammo than MRI and once a yr bone...no blood work at least not so far. Just like our bodies our cancers our teams our game plans are all so different yet similar.
Press on for care. Be your best advocate. Hope your team hears you and gives you answers. And pain is only SEs from AI and you try another...
(((Hugs)))
Cindy
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The first 2 years, I saw the RO every 6 months and he ordered a diagnostic Mammo each time.
Now I see him only once a year. I still see my MO every 6 months for the blood work, checking lymph nodes, breast check etc. He did order a
bone density scan this past winter. I am on Letrozole for another 2-1/2 years.
Vickie
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ndgrrl,
I did try OT, and they actually caused me to have a seroma, so the breast surgeon put a stop to it. It seems they were not familiar with ballon therapy. I have tried to cut back my schedule, but the receptionists at my job just do not seem to get it. I was told no more than 5 hours a day for a total of 20 hours per week. Today they booked me in for 10 hours and tomorrow i am book thru for 8 hours. I guess I am going to have to go out on disability again for 1 month and see if that helps. My concern is what if this swelling continues to reoccur ? I am 53 years old, all I know is hairdressing. If I continue to stay swollen, will that cause more harm to my breast ? Thank you for responding.....
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louanne,
I just had the Countora Balloon in December 2014. The procedure to place the device was a breeze. I watched the whole thing on ultrasound. Breast surgeon numbed the breast so well, that I didn't even know what was happening. It was more of an annoyance having to carry this thing around with me, but the week went by very quickly and other than not being able to shower, there were no issues. You get used to those sponge baths...lol...The removal did feel like a lot of pressure after it came out but the RO, massaged the area and put steri strips on it and out the door I went. 5 days, 10 treatments and done. I too have had seroma issues, but I bumped my breast into the corner of a cabinet, and OT, put me through some moves my breast was not ready for, so I really can't blame the radiation balloon. I work as a hairdresser, and with all the arm movement, it is causing a bit of an issue with the seroma, so right now we are trying to figure out how to handle that....good luck with what ever you choose......
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BigD- I asked my hospital about the cost of mammograms when they are less than one year. The financial office rep told me it is coded differently if you have a diagnosis and is then paid for. Screening would be only once a year. But we have moved into diagnostic mammograms which can be more often. That includes diagnostic in both breasts even if lumpectomy in one breast.
Today someone asked my daughter how I am. She suddenly realized she couldn't really say "fine". All there is to say is done with treatment for now and wait and see. That's disarming, but true I guess.
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Thanks for the responses to my brachytherapy question. Since I have decided not to go that route, I'm waiting for an appointment with a MO then expect another with a RO. Good luck to you all. I wish you all peace of mind, it is so hard to hang onto going through this.
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Thank you, Mimi. That is good to know!
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HI Lisa.
Can you get a note from your doctor stating you can only work 20 hours total a week? Also my breast and arm really did swell up when I was using my arm a whole lot at work when I went back 9 days after done with radiation- My doctor put me on a leave of absence for a month and that did help a whole lot.
Will the doctor drain your seroma? After mine was drained it felt so much better.
I would also suggest wearing a comfy bra, I have a couple of snap in the front sports bras that feel good when I wear them- I do have some of my old bras that I wear at times but some of them tend to rub on the area where the cancer was and it does make it swell as well.
For OT the gal there measured my arm and she gave me the option of wrapping my arm or just taking it easy and seeing how it went/ I went back the next week and swelling slowly was going down. She gave me a spandex tube top that she had me wear under my sports bra, and she also had me get ( insurance paid for it) a compression sleeve to wear when I was doing a lot of things with my arm.
She also showed me how to do that wall walk exercise in the shower to stretch out my arm.
She also would put K Tape on me that started at my breast and overtop my shoulder. This tape is quite spandex feeling and when I move my arm it would massage the nodes and it also helped well with the swelling. Now if I notice any swelling at all I will have my hubby help me with the tape. It works great.
Maybe you can try a diff OT therapist? Mine had special training for lymphedema.
Good luck I hope things work out well for you.
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Hi ladies!
I had my lumpectomy and SNB on April 2nd. So I'm 11 days out. Incisions are healing nicely and all the steri strips have fallen off. Oh my word does the skin under my arm hurt! Its that nerve-ending type of sensitive skin. Feels like really bad sunburn being rubbed with sandpaper. Skin on skin (where my upper arm rubs against my under arm/breast is the worst. It didn't start bothering me really bad until a couple of days ago. Its better if I can keep something against it, like if I press my shirt against it. Also, one of the nodes that was removed was really deep and they had to move a muscle. That arm now has limited range of motion so they're sending me to physical therapy, but by their description it sounded really common. I'm not concerned about it, because it just feels stiff. Its more of a nuisance than anything. Also supposed to be starting lymphatic massage because I do have some swelling in that arm and breast. (oh is that nipple SORE! Like engorged feeling.) Wondering if any of you have ideas for the skin pain? I don't know how one makes the nerves less sensitive.
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Hi Lespring,
I know the pain you are talking about. I had 9 nodes removed and they were deep so the doctor had to dig. I also felt better if I kept my shirt between my arm and my body. My doctor told me to use corn starch for the friction of the arm pit but I found it easier just to keep a shirt there.
I will get better, slowly the nerves heal. I had my surgery in August and I still do have some pain in my arm pit, kind of a pain numbness feeling but it is getting better.
I had OT on my arm and they showed me how to do the wall walk which stretched out my arm. They also used KT tape on my shoulder and it helped drained lymph nodes.
Just know it does get better, the swelling goes down and pain fades.
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Hi Girls! I have stage zero DCIS, high nuclear grade. I am 53 yrs young:) I am a teacher and I prefer waiting for the summer to have plenty of time to heal and rest. The Dr. said to have the surgery ASAP! I feel fine, no palpable lump, it's deep in the back of my left breast and small 1.5 cm approx. 11 o'clock position. Should I wait? Have anyone of you had the IORT? That's what I really want the one shot radiation done during surgery. Also, have you been told that you need to be on Tamoxiphen for 10 years? I am not a Happy Camper, but at least I feel fortunate that this was caught very early!
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Before Surgery:)
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I was diagnosed on 3/21, had surgery on 4/2. I was told Tamoxifen for 10 years, and then we realized I can't take it because of the stroke risk. Instead I'll be having my ovaries out. When does your school year end? But you have to remember that DCIS can become IDC and spread, and there is no way to know when that will happen. You are stage zero NOW, but you may not be 2 weeks from now. Because your lump isn't palpable you have no idea how fast growing your cancer is, and every woman's cancer is different. Mine was also at 11:00. The lump was found 2 years ago, mammo was ok, but I was going to a regular clinic and they didn't do an ultrasound. So my lump was there two full years before I was diagnosed, showing its true colors where aggressiveness is concerned. Have you had a breast MRI done?
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I sort of agree, but what do I know. Its not a terrible recovery and if all goes well you can be back at work and deal with further treatments later in spring and summer. But on the other hand if the path report comes back with further cancers and you need a mastectomy, you can address that right away. Best case scenario, one and done.
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Ysr, my opinion, for what it is worth, is to have the surgery now, as your surgeon suggested. My initial diagnosis was a .9 cm malignancy. After the surgery and final path report, the tumor was actually 2.2 cm with an area of DCIS right next to it that was sure to turn into IDC very soon. My surgeon said it is not uncommon to find that the area of concern is larger than what the initial biopsy and US reveals. Not only that, you sure do not want anything traveling into your nodes, if you can help it. Neither myself nor any of my doctors could feel my tumor and none of my nodes were swollen. I would be too afraid to wait, but that is me. I wish you the best with whatever choice you make!
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Ysr, P.S.: the higher the grade, the more aggressive the cells are. I am post-menopause, and have been put on Femara for 10 years. That is becoming more common now, 10 years over 5.
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My surgery is Tuesday morning and I have to go tomorrow to get the dye injected. I'm so nervous again worrying about the out come of the surgery now. My BS was very optimistic but I read posts here and I worry about yet another bad outcome. I should up the diag in my sig but I have IDC 1 cm ER 97% PR 95%+ HER2 -
I guess it will depend on how much they remove if I will have more pain and or drains. Ugh
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Hi HomeMom
Take slow deep breaths whenever you start to panic and let your mind gallop ahead.
I was terrified of having drains so I asked the nurse to show me what a drain looked like before hand and that helped me be calm that I would manage if I needed to. Perhaps you can ask to see a drain - then it wont be so scary. Also - you might not have a drain. :-)
The dye injections while not fun were quick. To be honest that was the part I dreaded the most. I was really scared to do it but it passed quickly and I don't have any lasting stress left over from it.
Over the counter medication was advised for me to stay as pain free as possible in order to maintain complete range of movement.
If the medical staff don't tell you - ask about when you should be wearing a bra - for a lot of us it was day and night for 2 weeks post surgery.
Also ask about what exercises you should be doing post surgery to maintain range of motion without hurting yourself in any way.
Will you be doing an Oncotype Test or any of the other genetic tests available?
Walking is very calming - try to get some walking done between now and Tuesday and know we are all here for you.
Hugs
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Yes, this is true about the mass being bigger than once they can see it with their own eyes. My lump was 2 cm on all my tests, but when I got into surgery they found much more "spiderlings" the were not visible on the scans so he removed almost twice as much tissue as what he expected. I was stage 1a, grade 2, ER/PR +, HER2 neg. I'm very lucky my nodes were clear on the SNB. I'm in education. I know how difficult it is to leave this time of year. But really? Is the risk worth it in the long term?
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